Teen fights clock, rare liver disease

Transplant wait takes emotional toll

You can see it in his discolored eyes, jaundiced skin and fatigue so bone-numbing, it's difficult for the 15-year-old to walk across the living room of his Lovington home.

Richard has a rare liver disease and needs a transplant to live. But the boy has been on a New Mexico transplant list for six months now without receiving a call.

There were, after all, only 18 liver transplants in the entire state last year. And the only way Richard can be upgraded to a national transplant list is if he's placed on life-support systems in a hospital intensive care unit.

Richard is down to his last two months, according to doctors who diagnosed him with primary sclerosing cholangitis after he first developed symptoms three years ago.

The same disease that football running back Walter Payton announced he was suffering from last year, PSC scars the bile ducts, causing bile to back up into the liver and migrate elsewhere.

The result is jaundice and a hardened liver that is incapable of storing energy or feeding body tissues.

A rare disease, PSC afflicts just three in 100,000 people. Most of them are in their 30s, 40s and 50s.

The chances of a 15-year-old getting PSC is one in 3 million, according Richard's father.

Although Richard was invited to join support groups whose members have PSC, the youngest patient was 45. "He's already had to grow up faster than other kids," said his father, who complained about the lack of state services available for children.

Doctors at first diagnosed Richard with ulcerative colitis when the sixth-grader developed a cold he couldn't shake, then a chronic case of diarrhea.

At the time, Richard was a robust 12-year-old who played baseball and made visits to his local emergency room on occasion, but only for stitches.

Although other PSC sufferers sometimes go 15 to 25 years before requiring a liver transplant, the disease progressed rapidly. As a result, the frail youngster was subject to a litany of medical procedures that he reeled off in monotone while sitting in a chair at his home on Tuesday: liver biopsies, colonscopes, upper GIs, lower GIs and the insertion of stents.

"He's seen at least 100 different doctors in the last three years," said Marla Price, who quit her job to care for her son. "When something wouldn't work, then they'd send us to another doctor."

Richard's condition began deteriorating last fall. Last week he was bumped to the top of the liver transplant list. Also last week, Richard was placed on a series of IV antibiotics which he receives at his home every six hours. His mother and a home-health nurse oversee the treatments that wake him at midnight, 6 a.m. and throughout the day.

While Richard said he usually is in no physical discomfort, the same can't be said for his mental health. When he became increasingly jaundiced in eighth grade, classmates called Richard names and adults shunned him.

"What really hurts me more is seeing parents take their children and move them to the other side of the aisle," Richard said of a recent visit to Toys 'R' Us. "Or when you walk in the bathroom, they hold their breath and hurry up and run out."

Once classmates were educated about Richard's disease, however, they rallied. Some students made a video apologizing for their thoughtless remarks, others e-mailed messages to Richard, some made posters and the school sponsored a charity dance.

The 50 or so cans at stores and businesses around town that collect donations for the Price family have helped. And the support from Lovington's First United Methodist Church, where Marla and Richard were recently baptized, has been a godsend.

Although Price, a maintenance foreman for the City of Lovington, had insurance and worked two other jobs part time to keep up with medical bills, he's been forced to dip into his pension and take a leave of absence from work to shuttle Richard to doctor visits in Lubbock and Albuquerque.

But the physical price is small compared to the emotional toll Richard's disease is taking on the entire family.

"That's the most horrifying thing, to see your child getting worse every day," Price said.

Nonetheless, it's always been important, the family agreed, to keep Richard advised of his condition. "The doctors kind of talk about this behind his back, but we don't," Price said. "You can't hide this from him. He sees it every time he looks in the mirror."

Price now keeps a cell phone and a beeper with him at all times. If and when the call comes that a liver donor has been located, an Albuquerque Med Flight is prepared to land in Lovington within the hour.

In the meantime, Richard will wear a shirt in public that identifies him as being on the liver transplant list, a small step to ward off stares from people concerned for their own health.

Statistics show that 88 percent of patients who receive a transplant are alive after a year and the long-term chances for returning to a normal life are promising.

"Yeah, I'd like to be my old self again," Richard said while sitting in his living room waiting for the telephone to ring.